The isolation of Self Injecting

I have been self injecting weekly since the middle of August 2017. This was to deal with neurological symptoms which developed in the months following the initial loading doses 18 months before. One monthly reduced to 2 weekly then finally weekly. I was having burning toes and pins and needles in feet and hands plus sore tongue and cracked corner of mouth and tinnitus. My toes also felt like chunks of felt.

The weekly injections stopped the burning toes problems after one day then came back on day 7. The tinnitus was there but just a background hiss, hands were still tingling but not so bad.

Gradually my feet felt as though they were mine again, no longer with felt toes, but they were very, very sensitive and walking without shoes was painful - it felt as if I was walking on the bones themselves. That has now got so much better.

At the end of each week I was continually rubbing my hands together, like dry washing them, to reduce the irritation from the tingling.

My mouth felt fine but I could feel the soreness returning by day 7.

One wonderful effect was the change to taste buds meaning red wine didn't taste like compost heap drainings. I could also recognise the various tiny flavours in single cask single malt whisky again.

I worked on the premise that I should continue whilst there was improvement until there wasn't any more improvement and so far everytime I have extended the interval between injections there has been a return of symptoms.

This last interval has been 10 days and although there were some signs of pins and needles in my hands and sore mouth corner my feet are much better and not so sensitive. No more felt toes.

So why have I posted this, well as the heading says, going it alone is isolating. Normally there would have been at least a couple of checking up session with the GP but as he isn't able to support what I am doing that hasn't been possible, anyway, he knows less than me about it now so I would be teaching him rather than him advising me.

I am actually asking the forum members for any comments they wish to make as from what I have gleaned this is the most knowledgeable location for B12 deficiency - the B12 University of the Web.

[wedgewood]

Yes , you are right . This is the best place for information on P.A. Our chairman and founder , Martyn Hooper , M.B.E. has already done so much for us —- two great books (Amazon ) I don’t know how long it will take for P.A. to be diagnosed more accurately . There is no incentive for G.Ps No conection to the Pharnaceutical giants who are more powerful than we realise .B12 is a vitamin and cannot be patented . No £££s or$$$s there ! I have been told by 2GPs that I know more about PA than they do —-no comfort to me at all .

Yes it’s somewhat isolating to have to self-inject , and many people I know really think I’m exaggerating everything about P.A. . Doctors are still hero-worshipped by many people ! ( not me, after what I have been through ) .

But isolation is a price worth paying, to be able to return to almost full health . This site is a HUGE blessing to me .

[Hidden in reply to wedgewood]

Something I realised many years ago is that our doctors are taught to follow tracks just like trains. Thinking outside the guidelines will just get them into trouble. One of my very good friends is a retired GP, now well into his 80's and he is just as bothered by the way PA and B12 deficiency is dealt with as his method, when in practice, was to treat the symptoms so that if daily doses were required then so be it, it wasn't an expensive drug. He too can see the 'tram line' mentality and has even had to battle it for himself.

Some years ago a consultant told me he recognised I had a problem, had no idea what was causing it and couldn't be bothered to find out. Sadly there were several of them with a similar attitude. Then I met, through a referral by a bright young woman, the one who saw my problem and had no idea what was causing it but promised me he would find out. It took him 2 years, during which time he made my life as bearable as possible. Then his team found the surgeon who could sort me out. And he did. Now of course although that problem is a thing of the past solving it created the reason for the B12 deficiency now.

My attitude now with GP's is that I will overlook one error but after the second I will not consult them again. It does mean there are very few of the older ones in our practice I am prepared to see and a couple of the younger ones are out of the frame as well. There is one, just one, I now trust and he is keen to learn about our problems with B12: there might well be a time when he needs to know for himself. He says he is by definition a generalist. He knows a little about a lot. He is more than happy to learn more about PA. But he is still constrained as a very junior partner. Time is a great healer and leveler and already several of the dinosaurs have dropped of their perches or gone off to do their own things. We can only hope the bright young ones get where they should be and not smothered by the form filling bureaucrats.

[wedgewood in reply to Hidden]

A very loud “Hear hear “ from Gloucestershire , ( did you hear it ?)

[Hidden in reply to wedgewood]

Sorry, didn't hear it - I was probably working my way through the first movement of Beethoven's Piano Sonata opus 57 (Appasionata) which I dearly love and hope, one day, to be able to play without mistakes and perhaps close to the correct speed.

This is something which has been helped no end by the B12 injections as I find my hands are much more responsive than they were. I have had a break from playing keyboard instruments - for my own enjoyment - for about 18 years then bought an electronic organ and digital piano, second hand, a couple of years ago, to start all over again. I find it wonderful exercise for the hands, upper body, legs and brain, Fortunately my wife enjoys what I play and so does the next door neighbour.

[Sleepybunny]

Hi,

"he is keen to learn about our problems with B12: there might well be a time when he needs to know for himself"

pernicious-anaemia-society....

[Hidden]

That was a year ago and things progressed nicely other than the GP not being able to support the additional supplies for self injection on a reduced interval. It didn’t actually matter as the German student who was at uni near us and stayed most weekends with is brought me a pack of 100 over. So with Medisave for the hardware I was all set.

That was until last November when the routine blood test made the GP declare me to be diabetic. Suddenly the awesome might of a GP in full flight was unleashed and I was immediately under the care of Nurse ‘MacFee’. My blood sugar was 5.5 things per whatsit - just over the threshold of 5 but sufficient for me to be examined minutely and also declared to have Atrial Fibrillation. My feet were examined by the podiatrists and she adds Peripheral Neuropathy to the list as I have no feeling in the soles. That was the wonderful bit as it reinforced what I had been telling them for 2 years. Still no prescription for increased B12, in fact nursey thinks is is toxic in more that half an ampoules worth.

The burning sensation, pins and needles plus electric shocks in hand and feet, with the old operation cut nerves going crackers started to be permanent.

I lost 2 stone, mostly by not indulging my craving for chocolate, took 3 metformin pills a day and plastic sugar in my coffee so things per whatsit were down to 4.3.

A month ago I was heartily sick of no sensation on toes, burning feet every evening, electric shocks making me look like Galvani’s frogs legs on a battery and every old injury on them screaming at me. And my illicit stock of codeine was running low. So I decided to inject Daily.

It isn’t as easy as I thought though. Once a fortnight isn’t so bad but sitting on the side of my bed every night and injecting alternate thighs isn’t for the feint hearted. It is an oh dear got to do that again moment.

But it is worth it, I do get a little burning sensation sometimes now but my hands and feet feel like mine again.

The real problem is I can’t go and talk this over with my GP. He doesn’t want to know about this. I can’t tell him I can walk on the carpet without feeling it is a cobbled alleyway. I can’t ask him how long I need to go on with this Daily injection regimen can go on.

So I can only look to the great people on this wonderful forum for help and opinion. Any idea of how long I should carry on with the daily injections?

(Apologies for they Trumpian rhetoric but as I am older than him I have a prior claim to flowery language.)